Sacral pain

[Faith]

I have read several people on the forum comment that they have sacral pain (some debilitating, some not as bad). Some people have said they can't lie on their back it hurts so bad and others say they can't walk due to the pain. I am trying to research and understand how sacral pain and PN are related. Those who have sacral pain where exactly is your pain? What does it feel like? Does it flare after certain activities? Do you have Sacroiliac joint dysfuntion or other biomechanical issues? Is it only to one side or both sides?

I have sacral pain primarily on the left side. My pain seems to flare with exertion (exercise, bending to pick up my daughter, doing housework, etc). I can lay on my back, but only for a a little bit. The longer I try to sit the more my sacral pain increases. I can push along my sacrum all the way down to my coccyx and it is sore to the touch. I also have a lot of pain in my sit bones, but moreso on the left. There are little 'knotty" areas that roll around when I rub them right up next to my sacrum on the left.

Those who have had TG surgery when they decompress the nerve do they start at the ST/SS ligament or do they go even higher up? Is it possible to have an entrapment higher at S2-S4?

No doctor doctor or PT (and I've been to 4 who specialize in pelvic PT) can figure out what is causing my sacral pain. I had SIJD for a while, but now everytime they do all the "tests" for SIJD I am negative, but I still have this sacral pain. My worry is that I will get to a PN specialist and they will say the sacrum is outside of the area innervated by the PN and there is nothing they can do about the saral pain.

[scaredgal]

Just some thoughts - don't know if any are valid. Since the sacral nerve roots for the PN are in the sacral area (S2/S3/S4) it seems probable that there might be pain at the root of the nerve. Also, is it possible that even though you do not currently have SIJD, that because you once did (or maybe even because of overly aggressive adjusting of the SI joints) that the pain is from the long and short SI ligaments? I've read a lot of research on SI pain (being an SI sufferer), that quite often pain from SI joints is not from the joint itself, but from the nerve endings of the ligaments - so maybe this is referring pain to the sacrum? Are your ligaments loose? Maybe prolotherapy is an option if they are? Have you had any epidural injections or just PN injections? Don't know if any of this applies, but just tossing around some ideas...

[Faith]

Also, is it possible that even though you do not currently have SIJD, that because you once did (or maybe even because of overly aggressive adjusting of the SI joints) that the pain is from the long and short SI ligaments? I've read a lot of research on SI pain (being an SI sufferer), that quite often pain from SI joints is not from the joint itself, but from the nerve endings of the ligaments - so maybe this is referring pain to the sacrum? Are your ligaments loose? Maybe prolotherapy is an option if they are? Have you had any epidural injections or just PN injections? Don't know if any of this applies, but just tossing around some ideas...

I have had very aggressive adjusting of my SI joint and yes I think that is what started my sitting pain. I do think my ligaments are lose as I have poor stability and weak muscles in my core/glutes. But any stregthening just flares up my pain. I have thought about prolotherapy, but I worry about the increased risk of scar tissue formation. I had a nerve root injection around S1, but it didnt' help at all. Have you read about anything you can do for the nerve endings of the ligaments if that is the sourse of the problem? I don't know if my pain is at the SI ligament level or more at the sacrotuberous level it's hard to tell where the one stops and the other starts. I just don't think that is my only source of pain though because my initial pain started with vulvodynia during pregnancy. And pain with wearing pants, intercourse, sitting, burning in perineum, urinary urgency...would all that only be caused by strained SI ligaments? I think I probably have 2 issues going on.

[scaredgal]

Hi Faith,

When my SI joint pain was at it's worse, I had a pain doctor do intraarticular steroid injections to the joint bi-laterally. It actually only made the pain worse. When I went back to him, I took him an article about the ligaments actually being the pain generator to much of the SI joint pain. He offered to do an injection to the ligaments, but I never went through with it. Shortly after this, I had a C-scan done that showed one reason I really had SI joint pain was pretty bad arthritis secondary to an inflammatory arthritis. Oddly enough, it's actually been better over the last year or so. I wish I could find the article - at the time I was doing a lot of research on the SI joint. Anyway, if you'll read some of Don Tigny's stuff about the SI joint, he also says the ligaments are the pain generator in many cases, not the joint itself. I quit PT on the SI joints, because they just wanted to do constant manual manipulations which probably isn't good if you already have loose ligaments. I've heard of some people getting better with the prolo - but I agree with you, I'd be concerned with the scarring since we already have PN complicating matters. Here's a pretty good pic of the SI posterior ligaments - so i would think that if you had sacrum pain, the ligaments could potentially be a contributor.

http://en.wikipedia.org/wiki/Posterior_ ... c_ligament

Does your sacrum burn or does it ache? When I had SI joint pain and sacrum pain (pre-PNE), there was no burning, it was an achy feeling. I wonder if the instability in the SI ligaments is actually causing something to rub against your Pudendal nerve? It's all such a puzzle, isn't it?

[Lernica]

Faith,

I have ALL your symptoms. I have been diagnosed strictly has having PN. Like Scaredgal, I think the sacral pain makes sense since the pudendal nerve roots begin there.

I start PT in February and will try to avoid any aggressive SI adjustments given your experience that it only made your pain worse. Thanks to this forum I am learning to take the gentle and non-invasive therapies first before trying the more invasive stuff, e.g. nerve blocks and botox injections. Sometimes after reading the stories on this forum I begin to think that the best recourse is to do NOTHING except to manage the pain and to hyperavoid sitting and lifting, and hope that rest and time will heal. Any thoughts about this, anyone?

Lernica

[Faith]

Yes, it is so confusing and I'm even a medical person! When my sacral pain first started it was a burning sensation and nothing stopped it. Now sometimes its it burning and sometimes it's just extremely sore. I think it burns more when I sit or am standing a long time. Thanks for the article and for sharing your experiences with the SI injection. I have thought about an SI injection, but the more I think about it I don't think it's going to do any good. I am glad your SI pain (or whatever it is) seems to be better! Ligament injuries take a super long time to heal (if they ever do) so maybe yours eventually healed itself to a degree. I worry that you are right that maybe my ligament instability rubbing the PN somehow. And if that's the real cause of all my pain then PN surgery probably wouldn't help me. My left sided gluetal muscles are wasting I guess because I am "guarding" due to the pain. but if I try to strenthen my core/glutes my sacral pain flares.

Thanks for sharing Lernica. I would also avoid any manipulations for sacral torsion if the PT finds that. They did that to me a few times, but it majorly flared me. My PT has also done some stretching of the sacrotuberos ligament and that really hurt! I am kind of thinking the same thing. I feel best when I do nothing by don't sit! But internal PT does seem to help me, just not the manipulation stuff.

[Lernica]

Re: "Does your sacrum burn or ache?" For me, it feels like there is a dagger in my sacrum, that wolves are gnawing at it, and that it is being ripped apart on a torture rack, all at the same time. I guess you would call that classic burning nerve pain.

It happens after standing for too long or while walking, even a short distance. I feel the pain mostly on the left side of the sacrum, the same side as my entrapped pudendal nerve. However, if I ignore it (like now, for instance ), the pain centers and even moves down into my perineum and across to my left lower abdomen.

Thankfully, after resting, the pain subsides. Which is what I'm gonna try to do now.

Lernica

[scaredgal]

Ouch, Lernica - I feel for you!

You know, that's odd that you said maybe just do nothing and maybe it will go away. I have a very weird story and weird theory. So, scar tissue doesn't form overnight, right? And I had some minor symptoms (that I didn't even attribute to PN) until I had some internal PT work done in July - then all hell broke loose. My latest pain doctor seems to think that the PT really irritated these branches of the nerve that may have already had scar tissue surrounding them. His theory is since nerves can take 12-18 months to heal (in his words), that this will probably just all eventually resolve. God, I'd like to hope so, but I'm skeptical. He doesn't really buy the "entrapment" in my case, since the nerves have probably been surrounded by scar tissue for a long while, but my symptoms have only been bad for 6 months.

I really do wonder - does PN just go away in some people if they are not truly entrapped?

[Faith]

And I had some minor symptoms (that I didn't even attribute to PN) until I had some internal PT work done in July - then all hell broke loose. My latest pain doctor seems to think that the PT really irritated these branches of the nerve that may have already had scar tissue surrounding them. His theory is since nerves can take 12-18 months to heal (in his words), that this will probably just all eventually resolve.

That is insteresting. I had a similar experience. I had vuvlodynia symptoms in pregnancy that resolved postpartum. I went to pelvic PT because I continued to have pain with intercourse, but no real vulvodynia and NEVER pain with sitting. I don't know what my PT did but I started having a lot of burning and pain in my sacrum and then couldn't sit. Very frustrating. I think some PT's are just too aggressive. I wish I had never gone, but nothing I can do about it now unfortunately. I've had the pain for 10+ months now and it only seems to get worse. I'm sure there are some people who do get better on their own or with conservative measures, but I don't believe those people were truly entrapped. I don't think if you are entrapped anything will "cure" you except maybe surgery and even that's not likely.

the same side as my entrapped pudendal nerve.

Lernica I was wondering how you were diagnosed with PNE? I think the only way you can know for sure you have an entrapement is by surgery. Have you had any PN blocks? I am sorry you have sacral pain in addition to all the other PN pain... I know the sacral pain is very frustrating!

[Lernica]

Faith asked: "Lernica I was wondering how you were diagnosed with PNE? I think the only way you can know for sure you have an entrapement is by surgery. Have you had any PN blocks?"

I should know better than to use words loosely on this forum of PN experts! I mispoke. I have not been diagnosed with PNE, just PN, but it IS on the left side.

Funny you should ask how I was diagnosed. I went to a pain doctor/neurologist in my city. I described my intense pain symptoms (see Faith's description above). During the whole appointment I did not sit down once on a chair. In his examining room he did the broken q-tip test on my vulva and inner thighs. He performed an internal vaginal exam. (He said he didn't want to do a rectal exam because he didn't want to send me "through the roof"). He asked lots of questions. He asked me to get dressed.

When I returned to his office he expressed his very sincere belief that I had PN, based on my symptoms alone. We then discussed my treatment plan, and I started it the following month. He did not conduct any nerve blocks or nerve conduction tests. (The latter likely because I had three babies. The former because his anaesthetist, Dr. Peng, was not there that day.) He said he was basing his diagnosis strictly on my symptoms. He said that whenever he has a patient who cannot sit in a chair in his waiting room or office, he knows that the patient has PN.

This Dr. Gordon is the only doc in my city who specializes in PN and I trust his instincts completely. I totally don't mind not doing follow up diagnostic tests. I suffered from the pain of endometriosis for many years. This PN pain is completely different. As I described above, it is excruciating, burning, stabbing, relentless, disabling. I have the pain in all the classic PN spots. Because of the pain, I have had to take a medical leave of absence from work. So I am very keen to start treatment for PN right away. And that's what I'm doing.

Regards,

Lernica

(P.S. One day I will learn how to quote posts properly. I tried above but was obviously unsuccessful.)